Work with brainstrust

A unique charity with an inspirational story and an exciting future.

We’re here to help people live life with a brain tumour. We do this by helping people become less alone, less afraid and more in control.

It’s no small task creating a ‘brain tumour support’ sector from scratch, but we’re well on our way.

Step inside brainstrust and you’ll find talented people working together to improve the lives of everyone living with a brain tumour.

Support Specialist and Volunteer Manager – Central South England

Employment type

Flexible, home-based working

Full-time (37.5 hours per work)

Salary

£24,000 – £26,000 p/a dependent on experience

Job function

Support

Location

This is a home-based position, covering Berkshire, Dorset, Hampshire, Isle of Wight, Oxfordshire, West Sussex, Wiltshire.

The role

Working closely with the Director of Services and Head of Support, you will be trained to deliver brainstrust’s revered, impartial and impactful coaching and information service for people living with a brain tumour, and their families. You will instil empowerment and control in those living with brain cancer in Central South England, dramatically improving their wellbeing. Key to the success of your work will be the development and training of brainstrust’s network of patient support volunteers.

If successful, you will play a key role in helping us towards our vision to be readily available to as many of the 60,000 people in the UK who are living with a brain tumour, and their carers.

About you – experience and capabilities

You will be an excellent communicator, face to face, phone or email. You recognise the importance of listening, and you will be the sort of person that brings focus and calm to difficult situations. Prioritising your workload will be second nature, and you will be energised and driven by a passion for learning, and making life better for those with a long term and/or serious illness.

A degree is not essential, but a caring or communication skills qualification is desirable. It is important that you have a high standard of writing, and that you are on good terms with your computer, particularly MS office, email and maybe even salesforce.com or similar case management tools.

Responsibilities

Deliver a high quality, effective and impartial support and information service on the ground in your region.

Build a supportive network of relationships for people in your region at the crisis point of brain tumour diagnosis and beyond; for patients, families and carers.

Help to ensure that brainstrust delivers excellent, sustainable projects which contribute towards our goal of ‘instilling a sense of empowerment and control in everyone living with brain cancer’ in central south England.

Work collaboratively with local stakeholders to ensure that patient and carer information and support are available throughout the brain tumour journey.

Become first point of contact for brain tumour patients and their carers through a range of methods, to include our support line, Meetup groups, face-to-face meetings, webinars and online support groups.

Support with the production of information and resources which meet the criteria for our PIFTICK quality mark certification.

Be informed about relevant health, social care and voluntary sector developments.

Assist with the identification of regional service gaps and initiatives to create effective solutions and sustainable services which meet the needs of people affected by brain tumours who are living in central south England.

Support the delivery of brainstrust support services on a national basis, such as in the delivery of webinars.

Assist with ensuring that information about the patient experience is used to inform decision-making about local service provision for people affected by brain tumours.

Represent brainstrust in health and voluntary sector local networks as appropriate and share the learning internally and externally.

Ensure information, databases and patient records are maintained confidentially and safely in line with brainstrust‘s policies and procedures.

Support volunteers in service delivery with emphasis on user involvement.

Perform all duties in accordance with brainstrust‘s policies and procedures.

You will also:

Identify potential fundraisers in our patient and carer database.

Work with the fundraising team to ensure leads are sensitively and appropriately nurtured.

Identify potential patient and carer case studies.

Undertake other tasks as appropriate to the role.

Apply now

This is an exciting opportunity to have real influence. You can make a big impact in a small and stable (but growing) charity as we carve out a new sector for brain tumour support.

As an inclusive organisation committed to equal opportunities, we recognise the need for greater diversity in the charity sector, so we welcome and encourage candidates from a diverse range of backgrounds to apply for this role.

An informal chat about this role can be arranged by emailing jane@brainstrust.org.uk.

To apply, please email your CV and covering letter to Jane Gardiner, Head of Support at join.us@brainstrust.org.uk. The closing date for applications is 12 noon on Monday 6th September 2021, with interviews to be held on Thursday 9th September 2021.

To allow continual monitoring and improvement of our equality, diversity and inclusion policy, we would be grateful if you could complete this anonymous survey once you have submitted your application. Your responses are not linked to and will have no bearing on the outcome of your application.

You can read about what 24 hours of support at brainstrust looks like here.

And you can meet our team here.

Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerousNon-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php